I just want everyone to know it does get better. I suffered with this for 2 years. I did the exercises he recommends plus lots of neck, eyes, jaw and shoulder stretches to reduce stress and anxiety caused by the symptoms. Working in front of a computer was tough so. Every time I walked into a shop I’d stand near a shelf or wall incase I lost my balance. The exposure to bright lights or even too many people in a room (talking loudly) gave me anxiety … it just takes time to get better :)
@shaynaboyce68 how are you doing today? I have suffered with these vestibular issues for several months, which really gave me anxiety and hopeless. It is just so difficult. It literally there is no place you can hide from it. Even though I tried to sleep, it still woke me up to torture me
I understand completely. I keep having set backs but I'm pushing forward with vestibular therapy. What are you doing for treatment? I also take migraine medication.
Yes the worst part is you look fine. And diagnosis is difficult. So for the most of the time that I was unwell before the diagnosis really happened most people thought I was just faking or being lazy.
Man, I’ve had this for 6 weeks. Been to the ER twice. No medications helped. I’ve been in a very dark place. I’ve been a long time meditator but it feels like my mind is disconnected. The feeling is truly inexplainable. It has helped so much to know I’m not alone. Thankyou
Brother, I am on the same boat as you. Mine started in September 14th. I was rushed to the hospital. I am now 6 weeks out. How are you now 6 months out?
@ I’m much better. I still have episodes of dizziness or blurry vision but they’re far apart and not intense. That was one helluva ride though. Get well soon.
My Brother has been suffering for 11 months. He found your videos and credited you for saving his life. He was so mentally depleted and depressed. You gave him hope. I know he has thanked you but I wanted to as well.Thank you so much Sean. Your amazing. I wish you good health always.
Thank you for taking the time in making this video, you have given me hope. As a 32 year old head of household and father of 3 and working in the construction industry, ive had the worst last 4 months of my life. Your video gives me hope.
Also I strongly believe that people like you who have made videos or there are support groups, they impart more information and motivation than any of the doctors I ve see. Thanks Sean for such videos. It gives us lots of hope and motivation.
Iam living with vertigo for 15 years .But i had the vertigo episode this year in march and my life is upside down since than i dont have my balance back .I was in tears when i was waching this video to hear people going trough the same .Thank you sooo much for good information 👍
meyrem kalkan yeah it’s sometimes a bit of a relief that other ppl are struggling with the same stuff. It’s a tough thing to have. I hope you get better
Hello to Sean or anyone reading this post. To start, after watching this video I had every single symptom (like literally every single one, my symptoms even started in April) I even did the same type of recovery the same way. Iv had this issue for almost two years now but after the last 5 months I totally recovered to about 90%. What made me recover so quickly is I stopped trying to fix the vestibular systems, but rather try and find what is causing it. What I am about to say I really urge everyone to look into because I truly believe many people who suffer from these issues have this problem I am about to discuss. What I found out was causing my issues was CIRS (chronic inflammatory response syndrome) you get this when your body cannot detox toxins from your body. Your body is in a constant state of inflammation and is very hard to diagnose on a MRI. For me, I learned I was living in a moldy house for a year before my symptoms ever started. Sadly no amount of therapy can fix this, but rather it is a bandaid, the only way to fix this issue is to detox your body which can take months or a year or two. The crazy thing about CIRS is once you have your first bad flare up anything and everything will hurt you. Your body is taking in things from the environment and the foods you eat as threats. That is why some people cannot eat the foods they were able to before their issues started. CIRS can see gluten and sugar as threats and immediately flare up. These dizzy episodes of being off balance and vertigo are done by the brain being swollen and not getting good nutrition because the blood brain barrier is so thick. Plus CIRS can give you issues of tmj which many people never notice because their jaw doesn’t click when they open. But CIRS inflames all ligaments and muscles in the body. So there is a good chance your jaw joint is inflamed and pushing on the ear causing dizziness. When this happens it makes it hard for the eyes to work since the jaw,neck,ears and eyes are all connected. That is why people have eye issues such as converging issues and an unstable gaze. Sorry for the long post, but I believe this is something everyone should at least try and look into. CIRS is just now being talked about in terms of national coverage!
I found that cutting out all sugar, wheat, dairy and histamine foods made my symptoms feel a lot better, especially after dry fasting and only eating after 6pm fast tracked my wellness
Thanks for the video. I've been like this for years. I just about managed to wash my car the other day. It totally wiped me out. I desperately need to keep faith I will be ok again one day.
Thank You Sean for the video which giving us hope! This is a most difficult challenge for my entire life. It came out of no where and I was diagnosed labyrinthitis . Dizziness and Imbalance and ear inflammation have been haunting me for 2 months. Which felt like a two years for me. I started feeling losing hope and got anxiety.
@@8benzin Thank you, my friend! How long did it take for you get back to normal? I am just so worried and concern since it has been several months that I haven't be able to drive and back to work yet.
Hey friend, just got this at a bad time :( just turned 21 and I was ready to start college up again but like you it came out of nowhere. Got out of a long term relationship and most of friends moved away, I was starting to feel strong again but then out of nowhere I got this condition and I feel in a very dark place. I hope we can all push through this and recover
yeah, sounds about right for me. not even 2 weeks in though so its hard to say if this will stay long term. the brain fuzziness.. feels like im daydreaming but stuck in the daydream mode. The neck pain/strain. Even sitting up at my computer seems hard so i hold my head with my hand. Weird head pressure and burning feeling like I have a high fever. weird ear problems. And the fatigue and weak legs randomly showing up sometimes.. as if the dizziness and vision problems werent enough like wtf? lol. Glad you are recovering and i hope i and everyone else can
Thank you for all this information! I was diagnosed with cochlear hydrops in May 2019. I have constant tinnitus, constant disequillibrium, head pressure. I feel like I'm on a boat 24/7. I get nauseous sometimes if I look at crazy patterns. I'm also going to a functional neurologist who has me doing gaze stabilization. I'm also doing some forms of neuroplasticity. One of my favorite, easy ones is to stand on one leg and brush my teeth with my non-dominant hand. Most conventional doctors have been of no help. My best advice to anyone going through a vestibular disorder is take exceptional care of yourself and there is no such thing as an idiopathic (origin unknown) disease or illness. It just means doctors don't know how to treat it. You just have to find the origin and it will be hell sometimes, but you will be back to yourself. Be your own advocate and educate yourself.
Thank you so much for sharing your experience, Sean! It felt like you were telling my story, not yours! One of the most difficult parts of having a vestibular disorder is that no one understands it. Like you said- one looks fine! Only someone who has gone through it can understand the kind of darkness it can envelope you in! I could not help weeping while listening to you. You are the first person I have heard that is talking about symptoms that I have also suffered from, and all the blood tests and MRIs and what not, came out to be just fine! Being a married woman in India, it is so difficult to lead my life in a deeply patriarchal society that treats my health issues as "all in the head" and not real. There is no compassion at a societal level. I truly appreciate the recovery process that you have shared with us. If I may add to it, meditation helps, as does breathing techniques used in what is known as "Pranayama" in Yoga, with the two specific ones being 'Bhramari' and 'Anulom Vilom'. Once again, big thank you. Thanks also for suggesting online support groups for vestibular disorders. I wish you a full recovery. ❤
Thank you so much, I just came across your video. This is worst that anyone could go through. I have had this for 7 years. I was misdiagnosed with vertigo but was never told what to do just take mesci!ine. A year ago I made an appointment with any doctor he brought in a specialist to th some test he reported that I had vestibular disorder. I was referred to a neurologist to have a brain scan to make sure I did not have a tumer. I was sent to see a vestibular therapist, which I have been seeing since February, twice a week. Finally I got better systems went away not to long ago early August for 12 days I had a tromatic experience with one of my c!ose friends, and since I also suffer with anxiety it came back , my last day of therapy is Monday August 31 I don't have all your symptoms I think if I did I would have lost my mind but I do have the lightheadedness which affects my stomach weakness in my legs my eyes 👀 hurt I am not able to participate in family outings or friend's it's awful. family and friends don't get it. You become so frustrated and alone. If I was offered 50 million dollars to stay the way that I am I would give it all up if the choice was don't take the money and you will be granted your normal healthy life, I would choose my healthy life and give up the money. Just want to go back to normal.
Judith Ocasio hi thanks for reaching out. Seems like you’ve been through a lot, but seems like you’re finally finding your way. Definitely up and downs as you know, but even if your vestibular therapy coming to an end, id say still keep it up and staying active. That was very important for me... it’s hard. Ppl don’t understand it unless they’ve been through it
I saw this video on my 3rd day of vestibular neuritis, I was crying and miserable, and the comment section and recovery stories made me feel worse as it seemed the recovery time was months and even years, despite the doctor saying to me 4-6 weeks. I just came back to say I’m on my 12th day since the onset and I’m pretty much walking normal again! It was the longest 12 days of my life, my heart goes out to those who are still suffering, it’s truly horrible, but wanted to give some hope that there are quicker recoveries. This video was extremely helpful, I cancelled my $300+ vestibular clinic appointment after he said they just gave him a paper with an X in the middle. That exercise does help and I did do them everyday, I just used my own 😂
I am currently there is with you. I hope you got prescribed steroids. I heard it speeds up you recovery time. Anywho, I am 8 weeks in as of typing this. My eyes finally started working properly, I’ve had blurred vision for the last two months. Be prepared for 6-20 weeks of misery. This is what I was told by the therapist and ENT.
Yea man I’m going through this now, I thought I was developing Alzheimer’s or something or just going nuts, sure enough the ent said it was a vestibular dysfunction. I have awful ringing and humming in my left ear as well. Thanks man, a little hope is really reassuring
Look for vitamins that help tinnitus and if you can get a hearing aid from Amazon to use at night so you can listen to a fan and focus on that. There are also good white noise pieces that lsat all night.
Thank you so much for this video! I've had all these issues for 5 weeks now. My neurologist said it wasn't vestibular neuritis, just bppv, but I disagree. I have such similar issues with my eyes, balance and weird sensations of not feeling my legs. I'm saving this video and I'll be trying the exercises you mentioned. God bless you.
Thank you for posting this video. I am 14 weeks into VN - that is the diagnosis I received after a period of hospitalization and ruling out other afflictions. I'm 63 and this is my first episode, terrible misfortune for someone as young as yourself to be going through this, at my stage of life this has brought on an early retirement. I am working with a vestibular therapist - at my age neuroplasticity is comparably poor, so I expect I that I am in for a long-haul. I too am back in the gym and walking up to an hour or so, erg rower is manageable. Like you, I shall work toward better fitness, but my state of mind from day to day is also a challenge. COVID 19 as a backdrop - worse to be struggling through that disease, but would prefer to have avoided VN. I hope you achieve 100% recovery.
@@khroxas i'm 58 and have been dealing with it for about 9 months, getting better thank goodness because i did not want to live that way, so unreal and debilitating! Sean said it all right here in his video-Thanks Sean!!!
Thank you so much for sharing this. I am 7 weeks into VN. Depression and anxiety set in on week 3 and I have struggled since.... Your video has given me hope that this will not last forever. You are a legend.
I just jumped on to Thank Sean as Terry is my Brother. He is about 80% recovered now he says. He had 8 months off work…that was hard for him. He’s never not worked. It has not been easy. Today I woke up from sleep spinning as if I was Alice spiralling down the rabbit hole, nausea & vomiting, I couldn’t stand. I thought it might be genetic because I am the same age now as my Brother was last year when he first fell ill. Very weird. His neurologist said it’s not genetic. My Brother told me about Sean. So I thought I’d jump on and see. I am nauseous still 18 hours later but the dizziness has stopped…for now. I had no cold or flu symptoms just like Sean. A bit of ringing in my ears and felt tired. I am glad Sean is here if I need him and am so grateful he made these videos for my Brothers and everyone else’s sake. 🙏
I’m so glad I came across your video. I have very similar symptoms. I’ve been out of work for a month now and the symptoms came after being sick with bronchitis and a sinus infection. I went to my ENT and he is sending me to physical therapy and a neurologist. Hope you have a complete recovery from this. I’m hanging in there.
I have been dealing with vestibular neuritis since Jan 4, 2022. At month 7 and was getting better, have had a wave of symptoms this week. I appreciate your story and have learned a lot. God bless man!
Thank you, Sean. I've been working through VN for 7 months now, and today has been a tough day, physically and emotionally. So grateful I came across this video and was reminded that I'm not alone and there is hope. Love and light.
You're not alone and it is a tough ordeal to go through. Just have to stay active, keep going as much as you think you can't and keep believing you'll get better.
Thank you so much for making this video. I don’t have all the eye issues, but definitely my eyes aren’t working well together. I went to eye therapy a couple of years ago. I need to start doing those exercises again. My balance and dizziness have gotten so much worse. I am so encouraged by your story to get up and do stuff. My life has pretty much come to a stand still.
Hi there, sorry that you're going through this. I hadn't stopped the eye exercises for fear of it relapsing- with that said, I don't do them a lot and for only a couple minute before bed. I also do minor balance exercises still- hope you find your answers and feel better!
Thank you so much for sharing your experience and tips for this horrible ailment! I'm 16 days into this and it's the worst thing that has ever happened to me. I really appreciate you taking the time to make this video, this is such a scary, lonely, and debilitating feeling. Thank you for sharing your strength and hope.
Sorry to hear this happening to you. If this is inner ear related, look into research of steroid to settle inflammation. There’s studies of it when it’s early onset, if you take a steroid (I forget which one it’s called) that it helps prevent long term effects. Worth looking into
My story exactly!! Thank you for the video- I’ve been dealing with this for 13 months now. My story is identical to yours. I’m recovering slowly but surely. This was an encouraging video and I thank you for that! Good luck in your recovery!
@@kalvincan1270 yup been working. I was taken off work, 3 months in for about 4 months and then gradually went back. Couldn't do computer work for the longest time but mow I can
This is the first video I’ve came across of someone having 95% of the same symptoms of myself. This gives me hope. It’s been almost 2 months now and I haven’t been back to work yet. It’s definitely causing a lot of anxiety and depression. But this definitely gives me hope. I’ve been following the vestibular group on Facebook and it’s helped some too. I’m definitely going to try your suggestions. Thank you so much!
Andrew Raines yeah I hear you, it’s hard and it’s going to be hard but there’s hope. There will be down days but just know it gets better. When it’s over you’ll look back and see how much you’ve grown
@@sadclownmadclown2303 how are you? I’ve been suffering since dec 2020. First months were hell now I feel like it may be starting all over again because I have a cold
I feel the same way as you all and I'm glad I watched this video too. I was hospitalized this past Tuesday and then sent home but these last few days have been extremely horrible. It legit came out of no where and i work a remote job so I'm struggling with that as well. Just trying to have hope. That you for sharing this. If anyone had the name of the fb group please drop it.
Hi Sean, im italian and i had the same virus that damaged my vestibular...what can i say..its change my life..now it's been 3 years and i am 100% ok, i can say that you will get 100% better..only when whether changes you ll feel a little off..but just a little..and the reason is bc the damage nerve remain sensitive when whether changes..you will get a little headache..what its help me alot was to push any daily activity ,and active charcoal,( detox and clear breain fog immediately) and silica ( bamboo)..to reinforced nerve damage and inflamation...and its help alot when whether change. Dont give up !
Great video. Bless you. Mine just hit out of nowhere. Was feeling normal before. Just collapsed. No balance, couldn’t walk, see, dizziness, eyes were going from side to side, hated bright light, noises and constant vomiting 🤮 . Went to A&E and then sent to Acute stroke unit.. They thought I’d had a stroke but mri showed I hadn’t. Diagnosed with VN. It’s a horrific condition no one can explain. It’s been 10 weeks. Can actually watch tv now. Before it was too much stimulus. It’s got better but I’m still clumsy, fine motor skills are effected. Eyes still not focusing as much as before. I’m sooooooo sick of this condition now. Can’t drive. Can’t be a passenger either. I love figure skating and ballet and I’ve tried to go back but I can’t. Bless you xx
You're amazing! Thank you so much for making this video!! I've been dealing with this for almost a year and just got diagnosed a few weeks ago. This whole time I thought I was just dealing with anxiety. I got so much out of this video. I appreciate it so much!!
God's WarriorChild anxiety is definitely a symptom of it and thank you. Subscribe to my feed, I’ll be putting out more vids of things that have helped me! Best of luck on your journey
Thanks so much for this video! I have literally all the same symptoms. I’m at month four ... I feel it getting slowly better :) I have hope. 🙏🏼 it’s been the worst few months of my life so far. I cry all the time... but I forced myself to get my anxiety in order. Stress makes it worse. Can’t wait to be better!
So happy I discovered this video. My husband is 77 and he’s been so healthy and active his whole life. This has been so hard for him. This makes me believe he will get better. We are still in the diagnosis faze. But we’re pretty sure he has some kind of vestibular. Thank you again for this and I hope you have recovered and are doing well
34 years of this. Vestibular rehab has helped every 8 to 10 years but this time I am just not improving. Having an MRI of brain tomorrow. You have encouraged me to work harder on wye exercises. Thank you.
Thank you for being able to articulate what I am struggling to do so. I have forwarded this to my family to help break down what I am going through. Glad you are compensating successfully.
Thank you so much for sharing your journey because no doubt it is inspiring so many men and women struggling with these symptoms. I have some of the symptoms you did and its tough while being single with a young child. I'm so inspired and so happy to hear how much you've improved! Please make more videos as you can! 💜💜💜
Thank you so much for sharing this. I am in the beginning stages so I've been having quite a bit of anxiety and stress. Your story gives me hope! Also from Edmonton and totally relate to the whyte ave story!
I'm Edmonton area as well and am just three months in with what I'm told is vestibular hypofunction. Still very much trying to get symptoms under control and cope with the emotional aspects to this. Since your somewhat local to me I just thought I would say Hey, good luck, and let you know you're not alone right now in navigating this whole new world of.... well, stress, anxiety, and of course symptoms.
Awesome video. I'm 21 months now. I work in ENT ( how crazy eh) so I was fortunate to get my vestibular neuritis diagnosis very quickly but I learned very fast that they couldn't help me and it was up to me and rehab exercise etc. Good days and bad days and staying positive and giving my body what it needs on a daily basis. Every day seems to be different.
Great video! I'm going on 16 months. Went through all you described. VRT is highly recommended. Where I am the ENT offers testing and rehab. At this time I have mild vision anomolies. Such as something moving that isnt there. Hard to explain. I still get dizzy or the feeling that I want to faint. I get tired because my eyes work extra hard. One day I feel totally recovered. Then a week later I'm having problems. But I'm getting along. My life has changed in a lot of ways. I think this illness will be with me a long time to come. Best to all who are living with this very strange condition.
It's so nice to find videos like this that don't make you feel alone in the world. This condition is sooo hard. I have literally felt like life wasn't worth living and I have 6 beautiful children, if that tells you how awful this is. I am 7 months dealing with this. It's horrible at night. I can't lay down flat or I go into full blown vertigo, so I sit upright while the room spins gently all night long. People have no idea what this is like if they've never experienced it. I feel hopeful listening to your story. Thank you for sharing.
Hi Sean Great video thank you for this. I had this hit me out of the blue about 3 weeks ago, but like you mention I knew something hadn't felt right for a while, particularly with fatigue etc. This video absolutely nails my symptoms also , after an initial diagnosis of BPVV, I am now far more reassured that this is what I have (though awaiting confirmation of diagnosis). I am under the care of my GP after an initial night in hospital when it all happened. Scariest thing I have ever had and I was convinced it was a stroke. Thanks once again for posting this - it is hugely informative and has helped me understand the condition far better than I did.
Thank you @@8benzin I am slowly on the mend - slower than originally I thought it would be. This has been a nightmare and one I wouldn't wish on anyone. Before this happened to me I had never even heard of VN. Thanks for posting my friend.
@@brendanloy3520 don’t worry just keep going man!!! Stay positive . How long has it been?? I woke up one day and couldn’t even put my clothes on then kept throwing up for 3 months
@@8benzin Yes been 3 months more or less to the day now. Took ill at the end of day at a site I was delivering some training at - whole room was spinning to the right and just wouldn't stop for around ten minutes. Iwas Subsequently began to vomit and didn't stop for about a week! Admitted to hospital that evening and then discharged following day. Could hardly stand up. Eventually saw my own Dr who suspected VN (hospital had diagnosed me with 'vertigo', and when I read up on it, symptoms were exactly the same. Been a long slow road back since then - balance, vision, nystagmus, oud noises, bright lights etc etc usual stuff that everyone seems to have I guess but quite depressed as well with it all. The best part of it has hearing from people on here and other blogs because you know you are not alone with it and other people have experienced exact same thing. Thanks for posting back. I wish you all the best with your recovery also.
Thanks so much for posting. You are awesome! So impressed with your determination and discipline. I have been struggling with this and have made so many positive changes because of it. I get frustrated sometimes because recovery is slow. Let’s both keep going strong! Look forward to hearing about your progress.
Sarah Finlay yeah I’m pretty determined to beat this thing. Crappy hand to be dealt but you have to move on and do what ya can. Keep it up! It’ll be so good at the end of it and look back and realize how stronger you’ve become
@@leviackermann188 hi there Levi, the first time I experienced it back in 2019 it took months like almost a year before I recovered. Then this year it came back but was gone after 3 months. Its5 getting better.
merete rosenberg would you happen to have Twitter? I’m in a contest and if so could you like this pic? twitter.com/UpperDeckHockey/status/1235629037248110592
Thanks for posting this video.. it was excellent & very helpful & inspiring. My vertigo started 3 months ago following surgery on my leg. My leg is healing fine but i still feel woozy & as if I am falling all the time.. and I am getting tired of always grabbing for furniture, walls, doorknobs, etc whenever I try to get around the house! I will try the things you mentioned and walking outside. Thanks!
Hi Sean! Just saw one of your posts in Vestibular Hope the other day and clicked on the link of your recovery video right away! We have many similar symptoms - I was diagnosed with VN too a few months ago and Ibeen doing VRT for about a month now. My biggest disturbance is my vision since I feel like objects are moving. This is driving me crazy some days. That classic bouncy vision was never there for me but instead this slight movement I notice when I move my head. I am really hoping VRT will help improve my gaze:) Heres to full recoveryxx😊
Thanks for reaching out.. yeah it's a tough thing to battle, and the vision problems was one of my worst symptoms. It took time, but the eye exercises helped so much. I don't have anymore eye issues, but I was pretty relentless with the exercises. Even when it seemed like it wasn't working, I kept it up and it's paid off. I do it before bedtime, for maintenance (scared to regress). I hope the best for you, keep going
Oh my goodness this made me cry. I’m a 33 year old man, this is the most TERRIFYING FEELING! In august 2020 it began for me - your description is PIN POINT EXACT what happened to me. An intense episode that lasted a few seconds. Then nothing for a day or so. Then another intense episode lasting a second. Then a persistent, constant, dizziness and disorientation began for months. I’d say three months of hell. Then the anxiety developed. Fear of driving, weird panic attack feeling. Like if I thought about the symptoms it was almost like they would get worse or bring upon a panic attack. Now it’s ten months later, I felt much better but now I’ve had two more intense episodes and I’m feeling the constant dizziness again. I feel like I’m at square one again. I feel so scared and lost. I’m a 33 year old man and I feel so scared now! I try to walk walk walk. Thank you for NAMING the exercises too. Gosh your video really gives me hope you really described everything I’m feeling!
Sorry you’re going through this. And yes try the exercises I listed and remember results are measured in weeks, potentially months, so keep trying. It was all a trial and error for me, so what works for one may not work for others. Good luck
I am a Sean as well and since I had COVID in June 2022, I’ve had numerous problems. Tinnitus in one ear straight after infection. I still have this, but two months later, the dizziness kicked in and vertigo. Went to ED and they diagnosed Long COVID and then Vestibular Neuritis. A couple of days I woke up and could barely move so back to ED again. Same Doctor I saw the first time diagnosed BPPV which has since been dismissed by my ENT. My GP thought Menieres but I’ve had no hearing loss. Some days are average, most are awful. I’m having chiropractic treatment at the moment and my chiro says it’s likely a post COVID issue. He’s retraining me neurologically. I had a brain scan last month which has come back normal. I’m still no clearer and at one stage I was getting daily migraines, which have eased but I wake most days with head pressure and a headache of some kind. I fell over twice last week and just feel so off. I can’t exercise like I did and feel fatigued. The only thing that doesn’t quite feature in my symptoms are the eye issues. I am light sensitive and I get overloaded in large crowds now. Loud noises are just too much. It’s about eight months in and I am losing hope. I’m not the person I once was. Thank you for sharing this. I admire your honesty and hope you and I, everyone who has this horrible affliction recovers well and completely.
Hello Sean, I have very similar symptoms as well. I'm going for almost 2 years now. Nothing seems to help. Not medications therapy or anything for my situation. Not saying it won't work for you but how are you doing now?
NINE YEARS HERE. First went to my primary after waking with vertigo, headpain and feeling "out of it". The PA gave me prednisone and said it was BPV. Referred me to an ENT, she tried the Epley maneuver and said "NO, see an eye doctor." Saw the eye doc and he sent me for several blood tests ruling out Lyme Disease, Mythenis Gravis etc. Sent for MRI for possible stroke. Came back negative. Went to Walk-in doctor on a weekend because I was terrified, now having the head fog, spatial instability, strabismus, staggering, confusion with reading, ear buzzing/sensitivity and double vision . He said I most likely had, MS and said go to a specialist. Made an appointment with neurologist, but had followup with the eye doctor. He referred then me to a surgeon for possible Arteritis, but since I had a upcoming appointment with a neurologist I hesitated after seeing this 80+ surgeon with shakey hands, decided to see the neurologist first before agreeing to temple artery surgery. After seeing the neurologist, I had another MRI with contrast, which was "normal" but showed some lesions which he attributed it to migraines. The neurologist put me through an EMG nerve test. He basically said migraine, which made no sense to me. (I did have a history of migraine with visual symptoms, but very infrequent). But constant migraine for months on end with insane symptoms? The eye doctor did extensive testing, but said I probably had a 6th nerve palsy from diabetes affecting a nerve in my left eye. That's almost the end. Now all the doctors are retired. Recently, went for my annual eye check (he had my previous records from his partner). He couldnt believe prisms weren't tried for my double vision. Now waiting for them to come in. NINE FREAKING YEARS LATER. I STILL HAVE DOUBLE VISION & OCCASIONAL UNSTEADINESS. I literally felt crazy over the last 9 years. Thought I literally had Multiple Sclerosis... ( The night before the start of this nightmare, I had taken a large dose of Nyquil to sleep. A week before that, I was hit in the eye socket with my hatchback almost knocking me out... always wondered if either injured my inner ear and eye nerve.)
Thank you for sharing your story. I'm 4 months in after experiencing a vestibular episode on 9/11/2021. I've seen specialist after specialist and after a long wait I finally met with an ENT provider who diagnosed me with VN. I have a good VR therapist and was started on low dose Klonopin to address the anxiety but I think I'm starting to make some progress. Like you I use the X, broch string, do all the head movements but funny enough it was a game in Virtual Reality with a lot of visual stimuli and slight head and body movements that began to work for me. The environment still appears to jump when I walk and I still have issues with balance but I'm taking it one day at a time. I've had a few "out of the blue" vertigo episodes while driving, standing in a store and thankfully sitting on the couch but the incidents were brief. I never completely feel clear. I'm always aware that there is something a bit off with my gaze and balance and per my Dr. I may never be the same with 100% loss of vestibular functioning on one side but not being able to drive or work is just not an option for me so with hard work I hope to regain enough functioning to enjoy my life again.
Looks like you're doing the right things. I actually seen a VR simulation recently and I was thinking that it would be perfect to help with vestibular rehab. Keep going!
Hi. Im now 2 years in having VN. I cant seem to shake it .. Im still only 80% recovered and i say thats the best ill get.. Some days are really good but most its a constant struggle.. Anxiety inflames it dramaticaly , so i try to move around, talk and keep busy which helps the brain focus on that..fatigue is bad and my VN is worse when im tired , iv only had 2 episodes of vertigo since i developed this but sometiimes it feels like it wants to come on but it doesnt...dont give up people...im alive so thats good
thank you for sharing. the vestibular drills also helped me a lot with my balance. I hope for your complete recovery. Hope all of us will be healed and recovered from all these
I have constant tension everyday in the back of my neck and now sides of neck and stomach area, and constant sense of unbalance feeling. Like on a boat you say. I can't watch tv anymore, looking at my phone throws me off and I have trouble even sitting up eating. I can't walk around to long or I have to hold on to something because I get unbalanced feeling and lightheadedness. My body doesn't seem to ever relax. My anxiety makes it all worst. When I finally do, is when I lay down to fall asleep, I focus on positive thoughts and try relaxed and almost force myself to fall asleep. And then I'm up every 2 hours or so every night. It's terrible knowing I can't even play with my kids, or just do normal activities anymore. Where's the OFF swtich to all of this? 😔
I’m literally dealing with this now! Came out of no where. I was diagnosed with Vestibular Neuronitis and now almost a year later been diagnosed with Vestibular migraines because I’ve had a few episodes
I went through period of time in my life around 10 years ago that i was hit with vertigo and vomiting. It hit me finishing my rounds as a nurse. I had to hold side rails to get out doors. I had to keep head at steering wheel height to keep from throwing up. Ended up in hospital and to stop but not completely fix the problem. The ephley maneuver done at a e,n,t. Office was the procedure that made life bearable. Routine antivert 25 mg. Tabs one tab, 3 times daily. Tinnitus has never left but has become my body prediction center. For if get a fever the noise will get louder until fever or illness is over. I had the ephley procedure done 3 times in past ten years and have appointment at a new e.n.t. appointment in 6 weeks for recent episode. Im being treated for stomach ulcers and gastrtis that has inflammation in stomach and bowels.. the loud ear roaring and vertigo and depth perception let me know i had something wrong. Im back to taking 2 antivert tablets in the mornings to survive till my appt. 29th jan, 2024. I walk 3 miles ever other day out side. I learn not to look from side to side and keep my eyes focused straight ahead. I use my side vision crossing roads. i can avoid walking like a drunk person by not turning head left or right. Depths preconception has been a constant problem for past ten years. It is amazing i never hit a car in the back yet. Anyone riding with me in car about put there foot through floor trying to stop car for me. If i have a glass on end table by my chair often i knock it over because my depth perception is off trying to pick it up. Life never same sense first episode of vertigo. I'm 67 and retired now, i can't imagine being young as you are to have to deal with this.
It sounds like you had a rough time, it's something no one can understand until they go through it, people say you could be going through a depression and it's extremely frustrating to constantly justify and explain yourself, it's happened to me 10 years ago and going on again, hopefully it will pass
Just wanted to say this is a great video. I have been dealing with this for about 10 months and I'd say I'm about 90% better. As you mentioned, my remaining symptom is some eye strain that pops up and a little head pressure - I suspect this too is due to an over-reliance on vision and I should pick back up some of the eyes-closed balance VRT exercises I was doing more regularly early on.
Glad to hear from you and thanks for reaching out! Glad to hear you’re on your way too! I’m trying to figure out the whole eye strain and I’m just guessing with the whole “do things with my eyes closed” but I think it’s helping. I just did a bunch of computer work for a few hours and it threw my whole vestibular system off for a couple hours (but better than the whole day I guess). All the best to you
@@seanpangs7131 Regarding your eye strain, is your eye on the side of your affected ear where you feel the strain? That's the case for me. Eyes-closed balance work seems to help. For me wearing glasses takes away that eye strain too (which sounds obvious, but I don't wear contacts and I used to rarely wear glasses, except when I drive, before all of this started). Anyway, I have a blue light filter on my computer screen, which could be worth trying if your computer screen bothers you. I also put one on my phone. I'm not sure if these things are doing anything, but I figure why not just have them on there. My right eye seems like the last lingering symptom, which in all honestly I'd rather be dealing with than all of the symptoms that have come and gone over the last 11 months.
Sarah Lucas would you happen to have Twitter? I’m in a contest and if so could you like this pic? twitter.com/UpperDeckHockey/status/1235629037248110592
@@sarahlucas2557 Hey Sarah, have you figured out anything for the eye strain yet? I have just ordered an eye massager from amazon as some else said thats been helping them.
Thanks for taking the time to do these blogs. It’s helps greatly to hear from people with similar experiences. I am four months in and feel 80% at best, but also noticing slight improvements. Having never previously been prone to anxiety this illness has caused me to question many parts of my life and daily routines. Your videos are very well explained and you have provided excellent assistance. Thankyou.
Thanks for reaching out and thanks for the comment! I’ve never had anxiety either, but with this condition it goes hand in hand. Try to find a way to get the anxiety under control, it definitely helped in the healing process. Once I gained control over the anxiety, I gained confidence, and it helped so much. All the best
Yes Sean please do.. This is the worst part of it the head and vision. It's like sensory overload or like your in a fishbowl.. So drunk and out of it.. Please do another video.. 😢
You hit the nail on the head !! Diagnosed in 2015 and still a journey!! I was diagnosed with vestibular migraines. Bouncy vision still and drunk walking , bumping into door ways on bad days . And yes the weather affect you !! So does . I feel like the human barometer. Your videos intrigue me to keep pushing on .
Michelle Jarosak thanks for sharing! Nice to hear from you.. I’m curious when you say the vids intrigue you to keep pushing. Do you mean with vrt? If so, did you do it and stop?
Sean Pangs yes I was doing Vrt .and did stop . It didn’t feel like it was helping . I struggle the most with my vision. When this first started I could barely see to drive , White knuckling it all the way to work . My neck would be so sore . It felt like I could literally feel every little bump in the road . Very hard to keep focused. Could really feel I was concentrating hard and causing stress. I’m better at driving now , but still struggling with walking and focusing. Bad days with walking are.. feeling like I’m stumbling over my own two feet . At times I can feel right foot turn in , and my brain is trying to correct but feels like it’s not getting connection. It’s weird.
Michelle Jarosak oh yeah I absolutely know how you feel because I’ve felt that all. And the reason why I asked because I was curious if you stopped vrt.. now I’m wondering if you start up again and just continue if it’ll help? I just passed two years and I’m feeling waaaay more normal days than before. Now I think about the days when vrt didn’t seem like it was helping, but in total I calculated and I’ve done about 900 hours in vrt in those two years. And I’m just wondering if that’s around the magic number of hours of vrt that someone needs to put in, in order for the brain to retrain. It’s worth a shot
It's good to see and hear other people that are going through the same problems, I've been having most of these problems for a little over a year now on and off and have been worried that it is serious, been to the doctor several times and they tell me it's just anxiety...Thanks for the video. Good luck to all whom may be going through this.
Chris Brannon yeah I got the “it’s just anxiety” too. But you know your body and you know it’s not just anxiety. I’m anxious because I can’t balance and walk properly haha. I hope things get better for you.. I’m a couple months shy of two years and I keep getting better month over month. I know and believe I’ll get pretty damn close to 100% soon
Everything he described, the gradual build up, the flare up of it again, delayed visual vertigo, anxiety, photo sensitivity, eyes jumping, patterns setting off a fun house effect. I experienced the same! When I ended up in the ER my blood pressure and heart rate wouldn't go down. It delayed my diagnosis by a month to make sure it wasn't cardiac related. I broke down in front of my manager too! Luckily it's a desk position and we were doing almost nothing in the winter season. It's it took almost 3 months to see an almost useless ENT to say I have a vestibular weakness on my left side. I could have told anyone that. My left leg feels short (but not as short a before, it's getting better). Yeah, they never even told me it might be vestibular neuritis like they were afraid to admit it since it started so long ago. They refered me to vestibular therapy. I'm happy to say I have been improving in the last few weeks. It was severe but I appear to be improving on a faster track. Everything got instantly better when I was finally able to sleep through the night again without waking up dizzy and terrified. I take melatonin now to help stay asleep. Got on a heart health meal plan delivered to my house. Stopped caffiene. Realise now that my anxiety is down that caffiene doesn't affect it but alcohol does. Busy stores and certain lights still bother it. Did my eye exercises the first time yesterday. I had my first therapy session two day ago. It's helped my computer use already. Here's the weird part. Early on sitting something that moves like a car that judders or a rocking chair eased my symptoms. I can't feel the spinning/swaying motion. Driving actually helps. Being outside helps. I recorded a video of this hallway at work the has a ramp and winds around that has been bothering me. I'm going to show my therapisy to dial in the therapy.
Hi. I’ve been told I’ve got weakness in my left ear too. I’ve been dealing with this since February. How are you doing now? What medications have you taken, have they helped ?
My issue is my episodes last a day or two usually and mines related to my neck I believe as I have a reversed curve neck. Whenever I get to see a doctor, most of the symbols have either gone, or they don’t show physically like yours with nystagmus etc. it’s such a struggle to explain the floor is bouncing and my body feels like it has a constant loud heartbeat feeling throughout my whole body, whether I’m relaxed, trying to sleep trying to walk whatever I feel that. They originally said it was viral meningitis, it would never likely happen again, then it did, slightly changing symptoms each time, this last episode has stuck with me so far for weeks. Legs are weak and I feel drunk.
I’m 4 months in and starting to recover. I’ve had vertigo episodes, and spatial awareness problems. I would try to snap to an object and my eyes wanted to keep going. I had to expose myself to grocery shopping and started working out and fighting through the nausea. I started doing VRT and feeling a lot better. Every now and then I get a sense of numbness in my leg. I’m around 80% now. Hopefully I’ll be 100% soon. This is a weird Illness and nobody understands.
Thanks for this it really helps ! I have been about 2 yrs into it and gradually getting better with help of you tube vids because all clinics closed in uk with COVID ! I totally understand what u said about walking in public I drive to a local park and found it so much easier because no one knew me ! I struggle walking downhill working on that !
Today marks 8 months that I've had to deal with Vestibular Neuritis. It's now about 90% gone. I walk everywhere trying to shake this. Still feels like I'm walking on a waterbed. Still have the brain fog from time to time. Still have extreme sensitivity to sounds. Even someone washing dishes in the next room will make me jump. My ENT now thinks I may have a Vestibular Migraine. He then prescribed me an anti-depressant. I told him I don't take anti-depressants. I'm the reason other people take anti-depressants. In any case this summer has sucked walking past my parked Harley knowing I still can't ride it.
@@8benzin And now it's been 14 months. On the plus side my ENT sent me to a Neurologist who asked me a simple question. Have you ever had your blood pressure measured while standing up? Yeah while standing my B.P. is 85/65. That might be a cause.
So mine happened about 2 weeks ago. Total loss of hearing in my left ear, dizziness,, eye shake, vertigo and constantly light headed. I got on steroids immediately along with allergy drugs to help. They also gave me drugs for dizziness which help a little. They said it was caused by a virus but I am dealing with a lot. I went to a ENT who told me I have a small chance of my hearing coming back but not to count in it. I already have a 60% loss in my right. So I looked into vestibule exercises and they are helping. I changed my diet and started adding supplements that are good for the hearing. I’m going into a rehab center next week but honestly there is more on TH-cam than anywhere else. I will probably get back to work in a mont but I need to let my brain readjust. I’ve been walking in stores and I hold a cart. I want to be able to drive safely again. I can go short distances but I’m not comfortable with anything over 10 miles at this point. It seems to be getting better a little at time but I’m not going to rush it.
I'm just now starting to spin less. Like you said it came out of no-where. Trip to the ER by ambulance, and miss-diagnosed 3 times. Finally my ENT who saw me knew instantly that I had Vestibular Neuritis and prescribed me Prednisone. After 3 weeks the spinning is almost gone. He did say it was like the measles. Once it's gone it's gone. You don't get it again. Just prior to getting this I had my left shoulder totally replaced. My biggest concern was spinning out and landing on my new shoulder.
I’m so sorry for the ones dealing with this. I’ve gotten so many things tested and everything checks out “normal”. What’s helped me the most if following the advice of “The Steady Coach” here on TH-cam. She has many success stories as well that have given me so much hope and I’ve seen improvements within just one week!! I wish everyone a recovery. ❤
Thank you for sharing!!! My VN began May of 2019.Went to urgent, ER,ect.I was getting improperly diagnosed intil I was seen at nerologyI was put on Prednisone for 12 days, I started to feel alittle better.I have had alot of theraphy. The anxiety is the hardest for me now,Im fine going into stores& driving only if somone is with me, going myself the anxiety is really bad.
Bertha Emerson the anxiety gets better.. confidence is a big thing. One you start to feel better, balance etc, the more confident in public places, the anxiety gets less and less.
I never knew about this, maybe this is what I have, my doctor says I have bppv, my biggest thing is I get dizzy so much, and the more I walk the worst I feel. I was at the point where my anxiety got so bad I couldn’t leave the house, sometimes I feel like I’m disconnected from reality if that makes any sense, I sometimes get this pressure feeling in my head, and I’ve had test done on my ears and they have came back fine but to me my ears don’t feel right. I’m just tired of being miserable I can barely make it through a work day.
Thank you for making this video! I have to make my own video too to help spread the word -- I had a relapse of VN earlier this year and tho it was a brutal 3 months, I recovered thankfully.
@hawaiidispenser glad you recovered! I'm almost at month 3 and my last lingering symptom is the walking on a trampoline although it's getting slowly better. What helps this symptom? I've been walking like crazy so i think that's helping too.
@@alexandrawalton7616 Thank you! The trampoline walking feeling was my last lingering symptom as well. My dizziness and nausea had all gone by 1.5 months, but the trampoline lasted another 1.5 months. I added more side to side stepping, which i learned from Simply Seth on TH-cam (see his video in the snow) as well as adding chair spins... but the plain truth is... I stopped all vrt after a few weeks and just walked everyday, twice a day and then one day i noticed.... Hey, no moon walk feeling! So its probably gonna happen on its own in time for you too. stay active, but try not to stress and it will come. good luck!
@@hawaiidispenser thanks so much for the reply. Yup my dizziness and nausea stopped at 1.5 months as well! I feel like I'm right there! Thanks I'll go check out seth's video 😊
Thank You for the positivity!! I have been feeling this for a month and a half now. Couldnt tell what it is as i havent to so many doctors. This gives me so much hope! Im praying for recovery for the next year!
Thank you so much for making this video! i have been suffering from vestibular neuritis for 3 months now. I am slowly recovering but I need to do more to help with my process
Good to hear you’re doing better. Maybe doing more is good but I learnt I had to listen to my body, sometimes I had to do less as well. All the best to you
Been dealing with dizziness for three years , it’s the worst , and I wouldn’t wish this on my worse enemy.
I just want everyone to know it does get better. I suffered with this for 2 years. I did the exercises he recommends plus lots of neck, eyes, jaw and shoulder stretches to reduce stress and anxiety caused by the symptoms. Working in front of a computer was tough so. Every time I walked into a shop I’d stand near a shelf or wall incase I lost my balance. The exposure to bright lights or even too many people in a room (talking loudly) gave me anxiety … it just takes time to get better :)
You are 90% better?
Thanks for sharing are you better, I’ve been dealing with dizziness since October of last year I’ve had all test ran everything is positive .
@shaynaboyce68 how are you doing today? I have suffered with these vestibular issues for several months, which really gave me anxiety and hopeless. It is just so difficult. It literally there is no place you can hide from it. Even though I tried to sleep, it still woke me up to torture me
@@vita6667what feelings you feeling these days?
@@deeturner7237what feelings are you feeling at moment ?
Yes. Very well described. What really helped me was quitting sugar and wheat items. Glutin is very inflammatory to the vestibular system. Best wishes.
Thank you for sharing, I've been in treatment for vestibular migraine disorder and vertigo for the last 5 years, it's extremely tough
I understand completely. I keep having set backs but I'm pushing forward with vestibular therapy. What are you doing for treatment? I also take migraine medication.
Yes the worst part is you look fine. And diagnosis is difficult. So for the most of the time that I was unwell before the diagnosis really happened most people thought I was just faking or being lazy.
rohita vikash it’s definitely tough. How are you these days?
Not good. I walk with help. I'm going to see a specialist soon. I ve not been taking any supplements or medications.
Who did you finally get to diagnose it
@@Sam-o7x1tho what are your symptoms?
Please share your social media support groups link , I have the same symptoms.
Man, I’ve had this for 6 weeks. Been to the ER twice. No medications helped. I’ve been in a very dark place. I’ve been a long time meditator but it feels like my mind is disconnected. The feeling is truly inexplainable.
It has helped so much to know I’m not alone. Thankyou
have you try Betahistine Mesylate. it's very cheap medicine that works for me in my country
Keep head up! Will get better!
@@8benzinhi, hiw are you now, are ou healty? What are your principal symtomps?
Brother, I am on the same boat as you. Mine started in September 14th. I was rushed to the hospital. I am now 6 weeks out. How are you now 6 months out?
@ I’m much better. I still have episodes of dizziness or blurry vision but they’re far apart and not intense. That was one helluva ride though. Get well soon.
My Brother has been suffering for 11 months. He found your videos and credited you for saving his life. He was so mentally depleted and depressed. You gave him hope. I know he has thanked you but I wanted to as well.Thank you so much Sean. Your amazing. I wish you good health always.
How is your brother feeling now? Thank you for your response.
Thank you for taking the time in making this video, you have given me hope. As a 32 year old head of household and father of 3 and working in the construction industry, ive had the worst last 4 months of my life. Your video gives me hope.
Hope you are better my brother.
I’ve had it bad too!!:(
Hey Rey
How you holding up?
Are u better
@@jeffslancik1341 do you have spongy walking feeling ?
Also I strongly believe that people like you who have made videos or there are support groups, they impart more information and motivation than any of the doctors I ve see. Thanks Sean for such videos. It gives us lots of hope and motivation.
So true. Never thought I would be in a point n my life where I felt so hopeless. But it will get better.
Iam living with vertigo for 15 years .But i had the vertigo episode this year in march and my life is upside down since than i dont have my balance back .I was in tears when i was waching this video to hear people going trough the same .Thank you sooo much for good information 👍
meyrem kalkan yeah it’s sometimes a bit of a relief that other ppl are struggling with the same stuff. It’s a tough thing to have. I hope you get better
Hello to Sean or anyone reading this post. To start, after watching this video I had every single symptom (like literally every single one, my symptoms even started in April) I even did the same type of recovery the same way. Iv had this issue for almost two years now but after the last 5 months I totally recovered to about 90%. What made me recover so quickly is I stopped trying to fix the vestibular systems, but rather try and find what is causing it.
What I am about to say I really urge everyone to look into because I truly believe many people who suffer from these issues have this problem I am about to discuss.
What I found out was causing my issues was CIRS (chronic inflammatory response syndrome) you get this when your body cannot detox toxins from your body. Your body is in a constant state of inflammation and is very hard to diagnose on a MRI. For me, I learned I was living in a moldy house for a year before my symptoms ever started. Sadly no amount of therapy can fix this, but rather it is a bandaid, the only way to fix this issue is to detox your body which can take months or a year or two.
The crazy thing about CIRS is once you have your first bad flare up anything and everything will hurt you. Your body is taking in things from the environment and the foods you eat as threats. That is why some people cannot eat the foods they were able to before their issues started. CIRS can see gluten and sugar as threats and immediately flare up.
These dizzy episodes of being off balance and vertigo are done by the brain being swollen and not getting good nutrition because the blood brain barrier is so thick. Plus CIRS can give you issues of tmj which many people never notice because their jaw doesn’t click when they open. But CIRS inflames all ligaments and muscles in the body. So there is a good chance your jaw joint is inflamed and pushing on the ear causing dizziness. When this happens it makes it hard for the eyes to work since the jaw,neck,ears and eyes are all connected. That is why people have eye issues such as converging issues and an unstable gaze.
Sorry for the long post, but I believe this is something everyone should at least try and look into. CIRS is just now being talked about in terms of national coverage!
Thanks for sharing
How can we detox? Thank you for your help.
I had this exactly as you described. Two years. Recovered now. :) What hell...
CCranstry glad to hear you recovered. Did you do VRT throughout?
Bjorn Lothbrok hey add me on Instagram - s.pangs and shoot me a message. It’s easier to chat on there
hi, share your daily activities. and the things you do.
Did you have ear pain or tinnitus?
Germana Guarnaccia hi there, we all have the same problems and its really frustrating 😢
I found that cutting out all sugar, wheat, dairy and histamine foods made my symptoms feel a lot better, especially after dry fasting and only eating after 6pm fast tracked my wellness
Your story matches my experience word for word, place for place, symptom by symptom. Thank you for posting this video. It’s nice to know im not alone.
Thanks for the video. I've been like this for years. I just about managed to wash my car the other day. It totally wiped me out. I desperately need to keep faith I will be ok again one day.
Thank You Sean for the video which giving us hope! This is a most difficult challenge for my entire life. It came out of no where and I was diagnosed labyrinthitis . Dizziness and Imbalance and ear inflammation have been haunting me for 2 months. Which felt like a two years for me. I started feeling losing hope and got anxiety.
Keep positive!!
@8benzin how are you doing ?
@@vita6667I’m going great! You will get through . Just keep putting yourself out there and make your brain relax .
@@8benzin Thank you, my friend! How long did it take for you get back to normal? I am just so worried and concern since it has been several months that I haven't be able to drive and back to work yet.
@@vita6667hi, did you have hyperacusis? O ringing in your ears?
Hey friend, just got this at a bad time :( just turned 21 and I was ready to start college up again but like you it came out of nowhere. Got out of a long term relationship and most of friends moved away, I was starting to feel strong again but then out of nowhere I got this condition and I feel in a very dark place. I hope we can all push through this and recover
Keep moving forward! Takes breaks when you need to, but keep pushing forward
@@seanpangs7131hey Sean how are you man!? How are you feeling and all? Thanks brother
Thank you for sharing. I had a concussion last year and my symptoms and struggles are very similar. Wishing you a speedy recovery from Vancouver.
yeah, sounds about right for me. not even 2 weeks in though so its hard to say if this will stay long term. the brain fuzziness.. feels like im daydreaming but stuck in the daydream mode. The neck pain/strain. Even sitting up at my computer seems hard so i hold my head with my hand. Weird head pressure and burning feeling like I have a high fever. weird ear problems. And the fatigue and weak legs randomly showing up sometimes.. as if the dizziness and vision problems werent enough like wtf? lol. Glad you are recovering and i hope i and everyone else can
How are you doing ?
I am in third month of it and same symptoms like you.
Thank you for this Video. It gives me hope. I‘m 32 and have it since 5 months. Thankfully, It gets better week by week.
Thank you for all this information! I was diagnosed with cochlear hydrops in May 2019. I have constant tinnitus, constant disequillibrium, head pressure. I feel like I'm on a boat 24/7. I get nauseous sometimes if I look at crazy patterns. I'm also going to a functional neurologist who has me doing gaze stabilization. I'm also doing some forms of neuroplasticity. One of my favorite, easy ones is to stand on one leg and brush my teeth with my non-dominant hand. Most conventional doctors have been of no help. My best advice to anyone going through a vestibular disorder is take exceptional care of yourself and there is no such thing as an idiopathic (origin unknown) disease or illness. It just means doctors don't know how to treat it. You just have to find the origin and it will be hell sometimes, but you will be back to yourself. Be your own advocate and educate yourself.
Megan Henry thank you for sharing!! Best of luck in your recovery!
Yesss youre soo right we have to be our own advocate .Dealing with all the doctors since 9 month and iam still home bound 🙄
I am aged 54 Years. Thanks for sharing it dear. It makes me confident to overcome the Vestibular Neuritis.
Thank you so much for sharing your experience, Sean! It felt like you were telling my story, not yours! One of the most difficult parts of having a vestibular disorder is that no one understands it. Like you said- one looks fine! Only someone who has gone through it can understand the kind of darkness it can envelope you in! I could not help weeping while listening to you. You are the first person I have heard that is talking about symptoms that I have also suffered from, and all the blood tests and MRIs and what not, came out to be just fine! Being a married woman in India, it is so difficult to lead my life in a deeply patriarchal society that treats my health issues as "all in the head" and not real. There is no compassion at a societal level. I truly appreciate the recovery process that you have shared with us. If I may add to it, meditation helps, as does breathing techniques used in what is known as "Pranayama" in Yoga, with the two specific ones being 'Bhramari' and 'Anulom Vilom'. Once again, big thank you. Thanks also for suggesting online support groups for vestibular disorders. I wish you a full recovery. ❤
Thank you so much, I just came across your video. This is worst that anyone could go through. I have had this for 7 years. I was misdiagnosed with vertigo but was never told what to do just take mesci!ine. A year ago I made an appointment with any doctor he brought in a specialist to th some test he reported that I had vestibular disorder. I was referred to a neurologist to have a brain scan to make sure I did not have a tumer. I was sent to see a vestibular therapist, which I have been seeing since February, twice a week. Finally I got better systems went away not to long ago early August for 12 days I had a tromatic experience with one of my c!ose friends, and since I also suffer with anxiety it came back , my last day of therapy is Monday August 31 I don't have all your symptoms I think if I did I would have lost my mind but I do have the lightheadedness which affects my stomach weakness in my legs my eyes 👀 hurt I am not able to participate in family outings or friend's it's awful. family and friends don't get it. You become so frustrated and alone. If I was offered 50 million dollars to stay the way that I am I would give it all up if the choice was don't take the money and you will be granted your normal healthy life, I would choose my healthy life and give up the money. Just want to go back to normal.
Judith Ocasio hi thanks for reaching out. Seems like you’ve been through a lot, but seems like you’re finally finding your way. Definitely up and downs as you know, but even if your vestibular therapy coming to an end, id say still keep it up and staying active. That was very important for me... it’s hard. Ppl don’t understand it unless they’ve been through it
@judithocasio7376 How are you feeling now? Please let me know. Thank you!
I saw this video on my 3rd day of vestibular neuritis, I was crying and miserable, and the comment section and recovery stories made me feel worse as it seemed the recovery time was months and even years, despite the doctor saying to me 4-6 weeks. I just came back to say I’m on my 12th day since the onset and I’m pretty much walking normal again! It was the longest 12 days of my life, my heart goes out to those who are still suffering, it’s truly horrible, but wanted to give some hope that there are quicker recoveries.
This video was extremely helpful, I cancelled my $300+ vestibular clinic appointment after he said they just gave him a paper with an X in the middle. That exercise does help and I did do them everyday, I just used my own 😂
I am currently there is with you. I hope you got prescribed steroids. I heard it speeds up you recovery time. Anywho, I am 8 weeks in as of typing this. My eyes finally started working properly, I’ve had blurred vision for the last two months. Be prepared for 6-20 weeks of misery. This is what I was told by the therapist and ENT.
Yea man I’m going through this now, I thought I was developing Alzheimer’s or something or just going nuts, sure enough the ent said it was a vestibular dysfunction. I have awful ringing and humming in my left ear as well. Thanks man, a little hope is really reassuring
No problem, all the best to you
Look for vitamins that help tinnitus and if you can get a hearing aid from Amazon to use at night so you can listen to a fan and focus on that. There are also good white noise pieces that lsat all night.
Milk man
Me too!!! What type symptoms do you feel??
I also got VN a Month ago. I also got the tinnitus and humming in my left ear. How are you now?
@@seanpangs7131 hey Sean how you doing man!? Feeling better and all?
Thank you so much for this video! I've had all these issues for 5 weeks now. My neurologist said it wasn't vestibular neuritis, just bppv, but I disagree. I have such similar issues with my eyes, balance and weird sensations of not feeling my legs. I'm saving this video and I'll be trying the exercises you mentioned. God bless you.
Thank you for posting this video. I am 14 weeks into VN - that is the diagnosis I received after a period of hospitalization and ruling out other afflictions. I'm 63 and this is my first episode, terrible misfortune for someone as young as yourself to be going through this, at my stage of life this has brought on an early retirement. I am working with a vestibular therapist - at my age neuroplasticity is comparably poor, so I expect I that I am in for a long-haul. I too am back in the gym and walking up to an hour or so, erg rower is manageable. Like you, I shall work toward better fitness, but my state of mind from day to day is also a challenge. COVID 19 as a backdrop - worse to be struggling through that disease, but would prefer to have avoided VN.
I hope you achieve 100% recovery.
Best of luck to you, good to know you’re staying active as much as you can
@@khroxas i'm 58 and have been dealing with it for about 9 months, getting better thank goodness because i did not want to live that way, so unreal and debilitating! Sean said it all right here in his video-Thanks Sean!!!
@@krae1111Has your tinnitus disappeared?
Thank you so much for sharing this. I am 7 weeks into VN. Depression and anxiety set in on week 3 and I have struggled since.... Your video has given me hope that this will not last forever. You are a legend.
It won't last forever.. there's some scary times but this is why I released this video. I had some dark days but I'm good now. I wish you all the best
I'm week 4!! Anxiety and stress skyhigh.
@@TheBella489 how are you now?
I just jumped on to Thank Sean as Terry is my Brother. He is about 80% recovered now he says. He had 8 months off work…that was hard for him. He’s never not worked. It has not been easy. Today I woke up from sleep spinning as if I was Alice spiralling down the rabbit hole, nausea & vomiting, I couldn’t stand. I thought it might be genetic because I am the same age now as my Brother was last year when he first fell ill. Very weird. His neurologist said it’s not genetic.
My Brother told me about Sean. So I thought I’d jump on and see.
I am nauseous still 18 hours later but the dizziness has stopped…for now. I had no cold or flu symptoms just like Sean. A bit of ringing in my ears and felt tired. I am glad Sean is here if I need him and am so grateful he made these videos for my Brothers and everyone else’s sake. 🙏
I’m so glad I came across your video. I have very similar symptoms. I’ve been out of work for a month now and the symptoms came after being sick with bronchitis and a sinus infection. I went to my ENT and he is sending me to physical therapy and a neurologist.
Hope you have a complete recovery from this. I’m hanging in there.
How are you feel now ? , i hope you are ok . Waht was your sintomps , may tell me ? I'm on tow months ago whit vestibular condicions
I have been dealing with vestibular neuritis since Jan 4, 2022. At month 7 and was getting better, have had a wave of symptoms this week. I appreciate your story and have learned a lot. God bless man!
How are you doing now at the 1 year mark?
How are you doing now? Please let us know. Thank you!
I really appreciate how detailed this is. I'm learning about this condition for a class.
Thank you, Sean. I've been working through VN for 7 months now, and today has been a tough day, physically and emotionally. So grateful I came across this video and was reminded that I'm not alone and there is hope. Love and light.
You're not alone and it is a tough ordeal to go through. Just have to stay active, keep going as much as you think you can't and keep believing you'll get better.
@@seanpangs7131 how’s it going Sean??
@@8benzin really good! Doing normal things now
@@seanpangs7131 that’s awesome ! Do you feel closer to 100% ? Better then last videos ?
@@seanpangs7131 hey Sean what type of normal things are you doing ? Like how is the dizzy symptoms ?
I am just at the beginning of this journey. Such helpful tools and resources and wisdom. Thank you for sharing such a compassionate message.
Dreamwalker Day no problem. All the best to you!!
Thank you so much for making this video. I don’t have all the eye issues, but definitely my eyes aren’t working well together. I went to eye therapy a couple of years ago. I need to start doing those exercises again. My balance and dizziness have gotten so much worse. I am so encouraged by your story to get up and do stuff. My life has pretty much come to a stand still.
Hi there, sorry that you're going through this. I hadn't stopped the eye exercises for fear of it relapsing- with that said, I don't do them a lot and for only a couple minute before bed. I also do minor balance exercises still- hope you find your answers and feel better!
Threeloys
Please reach out to me because I’m going through the same .
It’s good to help each other like Sean did
Thank you so much for sharing your experience and tips for this horrible ailment! I'm 16 days into this and it's the worst thing that has ever happened to me. I really appreciate you taking the time to make this video, this is such a scary, lonely, and debilitating feeling. Thank you for sharing your strength and hope.
Sorry to hear this happening to you. If this is inner ear related, look into research of steroid to settle inflammation. There’s studies of it when it’s early onset, if you take a steroid (I forget which one it’s called) that it helps prevent long term effects. Worth looking into
@@seanpangs7131would that be prednisone? My symptoms are about 14 days in and that’s what I’ve been taking.
My story exactly!! Thank you for the video- I’ve been dealing with this for 13 months now. My story is identical to yours. I’m recovering slowly but surely. This was an encouraging video and I thank you for that! Good luck in your recovery!
Lyndsey Milligan thank you! Good luck in yours too!!
Lyndsey Milligan did u take meds
How are you feeling now?
@@seanpangs7131 hey Sean!! Do you still work ? I had to quit my work. I’m 2 months into this . You seem like a cool guy man . Thanks for you video.
@@kalvincan1270 yup been working. I was taken off work, 3 months in for about 4 months and then gradually went back. Couldn't do computer work for the longest time but mow I can
This is the first video I’ve came across of someone having 95% of the same symptoms of myself. This gives me hope. It’s been almost 2 months now and I haven’t been back to work yet. It’s definitely causing a lot of anxiety and depression. But this definitely gives me hope. I’ve been following the vestibular group on Facebook and it’s helped some too. I’m definitely going to try your suggestions. Thank you so much!
Andrew Raines yeah I hear you, it’s hard and it’s going to be hard but there’s hope. There will be down days but just know it gets better. When it’s over you’ll look back and see how much you’ve grown
hi, how are you now? im suffering for 2 months now and also not back to work. i cant even go inside groceries or tall to other people for a long time
@@sadclownmadclown2303 how are you? I’ve been suffering since dec 2020. First months were hell now I feel like it may be starting all over again because I have a cold
I feel the same way as you all and I'm glad I watched this video too. I was hospitalized this past Tuesday and then sent home but these last few days have been extremely horrible. It legit came out of no where and i work a remote job so I'm struggling with that as well. Just trying to have hope. That you for sharing this. If anyone had the name of the fb group please drop it.
Thank you for this. You describe what I’m going through to a T. I hope that following these things it helps
Hi Sean, im italian and i had the same virus that damaged my vestibular...what can i say..its change my life..now it's been 3 years and i am 100% ok, i can say that you will get 100% better..only when whether changes you ll feel a little off..but just a little..and the reason is bc the damage nerve remain sensitive when whether changes..you will get a little headache..what its help me alot was to push any daily activity ,and active charcoal,( detox and clear breain fog immediately) and silica ( bamboo)..to reinforced nerve damage and inflamation...and its help alot when whether change. Dont give up !
For sure, thanks for sharing, and I too have recovered. All the best to you!
Has your tinnitus disappeared?
@@omarbilbao7460 yes it did..
Great video. Bless you. Mine just hit out of nowhere. Was feeling normal before. Just collapsed. No balance, couldn’t walk, see, dizziness, eyes were going from side to side, hated bright light, noises and constant vomiting 🤮 . Went to A&E and then sent to Acute stroke unit.. They thought I’d had a stroke but mri showed I hadn’t. Diagnosed with VN. It’s a horrific condition no one can explain. It’s been 10 weeks. Can actually watch tv now. Before it was too much stimulus. It’s got better but I’m still clumsy, fine motor skills are effected. Eyes still not focusing as much as before. I’m sooooooo sick of this condition now. Can’t drive. Can’t be a passenger either. I love figure skating and ballet and I’ve tried to go back but I can’t. Bless you xx
You're amazing! Thank you so much for making this video!! I've been dealing with this for almost a year and just got diagnosed a few weeks ago. This whole time I thought I was just dealing with anxiety. I got so much out of this video. I appreciate it so much!!
God's WarriorChild anxiety is definitely a symptom of it and thank you. Subscribe to my feed, I’ll be putting out more vids of things that have helped me! Best of luck on your journey
Thanks so much for this video! I have literally all the same symptoms. I’m at month four ... I feel it getting slowly better :) I have hope. 🙏🏼 it’s been the worst few months of my life so far. I cry all the time... but I forced myself to get my anxiety in order. Stress makes it worse. Can’t wait to be better!
You better ?
MJ I’m the same way you are !! If you still are but I’m going through this now Sean
2 months in
How are you feeling now?
@@shaneadrianjoseph4151yes I am 😊😊😊
@@kalvincan1270I am now recovered 🥹
So happy I discovered this video. My husband is 77 and he’s been so healthy and active his whole life. This has been so hard for him. This makes me believe he will get better. We are still in the diagnosis faze. But we’re pretty sure he has some kind of vestibular. Thank you again for this and I hope you have recovered and are doing well
Hey Claidia !!
I’m going through it now!! Worst thing ever !! What’s his symptoms ?
34 years of this. Vestibular rehab has helped every 8 to 10 years but this time I am just not improving. Having an MRI of brain tomorrow. You have encouraged me to work harder on wye exercises. Thank you.
Good to hear from you, and yes I found that staying active is key for me
Thank you for being able to articulate what I am struggling to do so. I have forwarded this to my family to help break down what I am going through. Glad you are compensating successfully.
Mac R no problem.. and yeah sometimes family/friends need to see it from someone else to truly understand. Hope you get well
I did the same he is the best
Thank you so much for sharing your journey because no doubt it is inspiring so many men and women struggling with these symptoms. I have some of the symptoms you did and its tough while being single with a young child. I'm so inspired and so happy to hear how much you've improved! Please make more videos as you can! 💜💜💜
Hoe are you donig now? A question , did you have hypieracusis? Ronging in your ears or tinitus?
Thankyou so much. Needed to hear it again that it will get better.
Hi, how r y doing now? I hope you are better.
Thank you so much for sharing this. I am in the beginning stages so I've been having quite a bit of anxiety and stress. Your story gives me hope! Also from Edmonton and totally relate to the whyte ave story!
I'm Edmonton area as well and am just three months in with what I'm told is vestibular hypofunction. Still very much trying to get symptoms under control and cope with the emotional aspects to this. Since your somewhat local to me I just thought I would say Hey, good luck, and let you know you're not alone right now in navigating this whole new world of.... well, stress, anxiety, and of course symptoms.
Awesome video. I'm 21 months now. I work in ENT ( how crazy eh) so I was fortunate to get my vestibular neuritis diagnosis very quickly but I learned very fast that they couldn't help me and it was up to me and rehab exercise etc. Good days and bad days and staying positive and giving my body what it needs on a daily basis. Every day seems to be different.
Oh wow that’s good to get a perspective from someone that works in ent.. glad you took initiative to do what you have to do to get better
Great video! I'm going on 16 months. Went through all you described. VRT is highly recommended. Where I am the ENT offers testing and rehab. At this time I have mild vision anomolies. Such as something moving that isnt there. Hard to explain. I still get dizzy or the feeling that I want to faint. I get tired because my eyes work extra hard. One day I feel totally recovered. Then a week later I'm having problems. But I'm getting along. My life has changed in a lot of ways. I think this illness will be with me a long time to come. Best to all who are living with this very strange condition.
Mike Robinson I hear you! What a battle for sure. Glad to see you’re doing better
How r u now?
It's so nice to find videos like this that don't make you feel alone in the world. This condition is sooo hard. I have literally felt like life wasn't worth living and I have 6 beautiful children, if that tells you how awful this is. I am 7 months dealing with this. It's horrible at night. I can't lay down flat or I go into full blown vertigo, so I sit upright while the room spins gently all night long. People have no idea what this is like if they've never experienced it. I feel hopeful listening to your story. Thank you for sharing.
No problem. It's tough but it gets better. It might be a slow process but it does
Hey girl, how are you now?
Hi Sean Great video thank you for this. I had this hit me out of the blue about 3 weeks ago, but like you mention I knew something hadn't felt right for a while, particularly with fatigue etc.
This video absolutely nails my symptoms also , after an initial diagnosis of BPVV, I am now far more reassured that this is what I have (though awaiting confirmation of diagnosis). I am under the care of my GP after an initial night in hospital when it all happened. Scariest thing I have ever had and I was convinced it was a stroke.
Thanks once again for posting this - it is hugely informative and has helped me understand the condition far better than I did.
Gets way better man!!!! Hang in there !
Thank you @@8benzin I am slowly on the mend - slower than originally I thought it would be. This has been a nightmare and one I wouldn't wish on anyone. Before this happened to me I had never even heard of VN. Thanks for posting my friend.
@@brendanloy3520 don’t worry just keep going man!!! Stay positive . How long has it been?? I woke up one day and couldn’t even put my clothes on then kept throwing up for 3 months
@@8benzin Yes been 3 months more or less to the day now. Took ill at the end of day at a site I was delivering some training at - whole room was spinning to the right and just wouldn't stop for around ten minutes. Iwas Subsequently began to vomit and didn't stop for about a week! Admitted to hospital that evening and then discharged following day. Could hardly stand up. Eventually saw my own Dr who suspected VN (hospital had diagnosed me with 'vertigo', and when I read up on it, symptoms were exactly the same. Been a long slow road back since then - balance, vision, nystagmus, oud noises, bright lights etc etc usual stuff that everyone seems to have I guess but quite depressed as well with it all. The best part of it has hearing from people on here and other blogs because you know you are not alone with it and other people have experienced exact same thing. Thanks for posting back. I wish you all the best with your recovery also.
@@brendanloy3520 hi , one question , you did tinitus , dezrelization or problems suhc as legs , arms pain ?
Thanks so much for posting. You are awesome! So impressed with your determination and discipline. I have been struggling with this and have made so many positive changes because of it. I get frustrated sometimes because recovery is slow. Let’s both keep going strong! Look forward to hearing about your progress.
Sarah Finlay yeah I’m pretty determined to beat this thing. Crappy hand to be dealt but you have to move on and do what ya can. Keep it up! It’ll be so good at the end of it and look back and realize how stronger you’ve become
Wow, thank you for telling us your story. This sounds SO similar to what I've been feeling for about six months now. Very scary stuff.
Thank you for your video. I’ve been through it, took two years to recover, you feel very alone going through this.
Everything you mentioned here. I felt it. It's really conforting to hear same story as myslef.
Are you still experiencing issues?
@@okaygames2245 yes, I thought I was at 80% recovery. Then a couple of days ago. I felt the dizziness again. But not as scary like before
@@NkoDmtryPoletv hey how do you feel now ? Hope good how long did it takes (month)
@@leviackermann188 hi there Levi, the first time I experienced it back in 2019 it took months like almost a year before I recovered. Then this year it came back but was gone after 3 months. Its5 getting better.
@@leviackermann188 do you experience one now? Im hoping you'll get better. It's really hard. It was the worst feeling ever.
Dearest Sean. Many thanks for publishing this video. I cannot tell you how grateful I am. Bless you, bless you, bless you.
merete rosenberg no problem!! All the best to you
merete rosenberg would you happen to have Twitter? I’m in a contest and if so could you like this pic? twitter.com/UpperDeckHockey/status/1235629037248110592
Thanks for posting this video.. it was excellent & very helpful & inspiring. My vertigo started 3 months ago following surgery on my leg. My leg is healing fine but i still feel woozy & as if I am falling all the time.. and I am getting tired of always grabbing for furniture, walls, doorknobs, etc whenever I try to get around the house! I will try the things you mentioned and walking outside. Thanks!
Thanks for sharing I’ve been dealing with dizziness since last October .
Hi Sean!
Just saw one of your posts in Vestibular Hope the other day and clicked on the link of your recovery video right away!
We have many similar symptoms - I was diagnosed with VN too a few months ago and Ibeen doing VRT for about a month now. My biggest disturbance is my vision since I feel like objects are moving. This is driving me crazy some days. That classic bouncy vision was never there for me but instead this slight movement I notice when I move my head.
I am really hoping VRT will help improve my gaze:) Heres to full recoveryxx😊
Thanks for reaching out.. yeah it's a tough thing to battle, and the vision problems was one of my worst symptoms. It took time, but the eye exercises helped so much. I don't have anymore eye issues, but I was pretty relentless with the exercises. Even when it seemed like it wasn't working, I kept it up and it's paid off. I do it before bedtime, for maintenance (scared to regress). I hope the best for you, keep going
How are you feeling now? Thank you.
Thank you so much for posting this. You really helped me not feel alone.
I speak with many people and there are a lot more ppl than you think struggling with this and have recovered
Oh my goodness this made me cry. I’m a 33 year old man, this is the most TERRIFYING FEELING! In august 2020 it began for me - your description is PIN POINT EXACT what happened to me. An intense episode that lasted a few seconds. Then nothing for a day or so. Then another intense episode lasting a second. Then a persistent, constant, dizziness and disorientation began for months. I’d say three months of hell. Then the anxiety developed. Fear of driving, weird panic attack feeling. Like if I thought about the symptoms it was almost like they would get worse or bring upon a panic attack. Now it’s ten months later, I felt much better but now I’ve had two more intense episodes and I’m feeling the constant dizziness again. I feel like I’m at square one again. I feel so scared and lost. I’m a 33 year old man and I feel so scared now! I try to walk walk walk. Thank you for NAMING the exercises too. Gosh your video really gives me hope you really described everything I’m feeling!
Sorry you’re going through this. And yes try the exercises I listed and remember results are measured in weeks, potentially months, so keep trying. It was all a trial and error for me, so what works for one may not work for others. Good luck
I am a Sean as well and since I had COVID in June 2022, I’ve had numerous problems. Tinnitus in one ear straight after infection. I still have this, but two months later, the dizziness kicked in and vertigo. Went to ED and they diagnosed Long COVID and then Vestibular Neuritis.
A couple of days I woke up and could barely move so back to ED again. Same Doctor I saw the first time diagnosed BPPV which has since been dismissed by my ENT.
My GP thought Menieres but I’ve had no hearing loss.
Some days are average, most are awful. I’m having chiropractic treatment at the moment and my chiro says it’s likely a post COVID issue. He’s retraining me neurologically.
I had a brain scan last month which has come back normal.
I’m still no clearer and at one stage I was getting daily migraines, which have eased but I wake most days with head pressure and a headache of some kind.
I fell over twice last week and just feel so off. I can’t exercise like I did and feel fatigued.
The only thing that doesn’t quite feature in my symptoms are the eye issues. I am light sensitive and I get overloaded in large crowds now. Loud noises are just too much.
It’s about eight months in and I am losing hope. I’m not the person I once was.
Thank you for sharing this. I admire your honesty and hope you and I, everyone who has this horrible affliction recovers well and completely.
Hello Sean, I have very similar symptoms as well. I'm going for almost 2 years now. Nothing seems to help. Not medications therapy or anything for my situation. Not saying it won't work for you but how are you doing now?
You guys will get better!! Just keep moving and don’t stop please!!
@@8benzinhi, may ask wath was your story?
NINE YEARS HERE. First went to my primary after waking with vertigo, headpain and feeling "out of it". The PA gave me prednisone and said it was BPV. Referred me to an ENT, she tried the Epley maneuver and said "NO, see an eye doctor." Saw the eye doc and he sent me for several blood tests ruling out Lyme Disease, Mythenis Gravis etc. Sent for MRI for possible stroke. Came back negative. Went to Walk-in doctor on a weekend because I was terrified, now having the head fog, spatial instability, strabismus, staggering, confusion with reading, ear buzzing/sensitivity and double vision . He said I most likely had, MS and said go to a specialist. Made an appointment with neurologist, but had followup with the eye doctor. He referred then me to a surgeon for possible Arteritis, but since I had a upcoming appointment with a neurologist I hesitated after seeing this 80+ surgeon with shakey hands, decided to see the neurologist first before agreeing to temple artery surgery. After seeing the neurologist, I had another MRI with contrast, which was "normal" but showed some lesions which he attributed it to migraines. The neurologist put me through an EMG nerve test. He basically said migraine, which made no sense to me. (I did have a history of migraine with visual symptoms, but very infrequent). But constant migraine for months on end with insane symptoms?
The eye doctor did extensive testing, but said I probably had a 6th nerve palsy from diabetes affecting a nerve in my left eye. That's almost the end. Now all the doctors are retired.
Recently, went for my annual eye check (he had my previous records from his partner). He couldnt believe prisms weren't tried for my double vision. Now waiting for them to come in. NINE FREAKING YEARS LATER. I STILL HAVE DOUBLE VISION & OCCASIONAL UNSTEADINESS. I literally felt crazy over the last 9 years. Thought I literally had Multiple Sclerosis... ( The night before the start of this nightmare, I had taken a large dose of Nyquil to sleep. A week before that, I was hit in the eye socket with my hatchback almost knocking me out... always wondered if either injured my inner ear and eye nerve.)
Thank you for sharing your story. I'm 4 months in after experiencing a vestibular episode on 9/11/2021. I've seen specialist after specialist and after a long wait I finally met with an ENT provider who diagnosed me with VN. I have a good VR therapist and was started on low dose Klonopin to address the anxiety but I think I'm starting to make some progress. Like you I use the X, broch string, do all the head movements but funny enough it was a game in Virtual Reality with a lot of visual stimuli and slight head and body movements that began to work for me. The environment still appears to jump when I walk and I still have issues with balance but I'm taking it one day at a time. I've had a few "out of the blue" vertigo episodes while driving, standing in a store and thankfully sitting on the couch but the incidents were brief. I never completely feel clear. I'm always aware that there is something a bit off with my gaze and balance and per my Dr. I may never be the same with 100% loss of vestibular functioning on one side but not being able to drive or work is just not an option for me so with hard work I hope to regain enough functioning to enjoy my life again.
Looks like you're doing the right things. I actually seen a VR simulation recently and I was thinking that it would be perfect to help with vestibular rehab. Keep going!
Hi.
Im now 2 years in having VN.
I cant seem to shake it ..
Im still only 80% recovered and i say thats the best ill get..
Some days are really good but most its a constant struggle..
Anxiety inflames it dramaticaly , so i try to move around, talk and keep busy which helps the brain focus on that..fatigue is bad and my VN is worse when im tired , iv only had 2 episodes of vertigo since i developed this but sometiimes it feels like it wants to come on but it doesnt...dont give up people...im alive so thats good
thank you for sharing. the vestibular drills also helped me a lot with my balance. I hope for your complete recovery. Hope all of us will be healed and recovered from all these
All the best to you!
I'm 3-1/2 weeks into this right now. And it doesn't let up. Can't walk, work, or (obviously) drive. Thanks for some hope that it'll get better.
Thank you for this Video. I have been dealing with this for months. I can see that I may be getting better. You are a great motivation!!
I have constant tension everyday in the back of my neck and now sides of neck and stomach area, and constant sense of unbalance feeling. Like on a boat you say. I can't watch tv anymore, looking at my phone throws me off and I have trouble even sitting up eating. I can't walk around to long or I have to hold on to something because I get unbalanced feeling and lightheadedness. My body doesn't seem to ever relax. My anxiety makes it all worst. When I finally do, is when I lay down to fall asleep, I focus on positive thoughts and try relaxed and almost force myself to fall asleep. And then I'm up every 2 hours or so every night. It's terrible knowing I can't even play with my kids, or just do normal activities anymore. Where's the OFF swtich to all of this? 😔
I’m literally dealing with this now! Came out of no where. I was diagnosed with Vestibular Neuronitis and now almost a year later been diagnosed with Vestibular migraines because I’ve had a few episodes
What did you do about that have you found any exercises or what could help 🙄🤧 i have same problems 🤥
Will get better!!
I went through period of time in my life around 10 years ago that i was hit with vertigo and vomiting. It hit me finishing my rounds as a nurse. I had to hold side rails to get out doors. I had to keep head at steering wheel height to keep from throwing up. Ended up in hospital and to stop but not completely fix the problem. The ephley maneuver done at a e,n,t. Office was the procedure that made life bearable. Routine antivert 25 mg. Tabs one tab, 3 times daily. Tinnitus has never left but has become my body prediction center. For if get a fever the noise will get louder until fever or illness is over. I had the ephley procedure done 3 times in past ten years and have appointment at a new e.n.t. appointment in 6 weeks for recent episode. Im being treated for stomach ulcers and gastrtis that has inflammation in stomach and bowels.. the loud ear roaring and vertigo and depth perception let me know i had something wrong. Im back to taking 2 antivert tablets in the mornings to survive till my appt. 29th jan, 2024. I walk 3 miles ever other day out side. I learn not to look from side to side and keep my eyes focused straight ahead. I use my side vision crossing roads. i can avoid walking like a drunk person by not turning head left or right. Depths preconception has been a constant problem for past ten years. It is amazing i never hit a car in the back yet. Anyone riding with me in car about put there foot through floor trying to stop car for me. If i have a glass on end table by my chair often i knock it over because my depth perception is off trying to pick it up. Life never same sense first episode of vertigo. I'm 67 and retired now, i can't imagine being young as you are to have to deal with this.
It sounds like you had a rough time, it's something no one can understand until they go through it, people say you could be going through a depression and it's extremely frustrating to constantly justify and explain yourself, it's happened to me 10 years ago and going on again, hopefully it will pass
Waleed Maharajh I hope it passes too man! All the best. And yeah it’s a definite struggle
Just wanted to say this is a great video. I have been dealing with this for about 10 months and I'd say I'm about 90% better. As you mentioned, my remaining symptom is some eye strain that pops up and a little head pressure - I suspect this too is due to an over-reliance on vision and I should pick back up some of the eyes-closed balance VRT exercises I was doing more regularly early on.
Glad to hear from you and thanks for reaching out! Glad to hear you’re on your way too! I’m trying to figure out the whole eye strain and I’m just guessing with the whole “do things with my eyes closed” but I think it’s helping. I just did a bunch of computer work for a few hours and it threw my whole vestibular system off for a couple hours (but better than the whole day I guess). All the best to you
@@seanpangs7131 Regarding your eye strain, is your eye on the side of your affected ear where you feel the strain? That's the case for me. Eyes-closed balance work seems to help. For me wearing glasses takes away that eye strain too (which sounds obvious, but I don't wear contacts and I used to rarely wear glasses, except when I drive, before all of this started). Anyway, I have a blue light filter on my computer screen, which could be worth trying if your computer screen bothers you. I also put one on my phone. I'm not sure if these things are doing anything, but I figure why not just have them on there. My right eye seems like the last lingering symptom, which in all honestly I'd rather be dealing with than all of the symptoms that have come and gone over the last 11 months.
Sarah Lucas would you happen to have Twitter? I’m in a contest and if so could you like this pic? twitter.com/UpperDeckHockey/status/1235629037248110592
how do you feel now?
@@sarahlucas2557 Hey Sarah, have you figured out anything for the eye strain yet? I have just ordered an eye massager from amazon as some else said thats been helping them.
Almost the same symptoms here - thank you for sharing with us.
Thanks for taking the time to do these blogs. It’s helps greatly to hear from people with similar experiences.
I am four months in and feel 80% at best, but also noticing slight improvements.
Having never previously been prone to anxiety this illness has caused me to question many parts of my life and daily routines.
Your videos are very well explained and you have provided excellent assistance.
Thankyou.
Thanks for reaching out and thanks for the comment! I’ve never had anxiety either, but with this condition it goes hand in hand. Try to find a way to get the anxiety under control, it definitely helped in the healing process. Once I gained control over the anxiety, I gained confidence, and it helped so much. All the best
Thank you for making this video! Please make another in depth video! I’m currently trying to recover! & my days have been so rough.
Fav Ooo I will make one soon. It gets better, there are rough days but it gets better. All the best
Yes Sean please do.. This is the worst part of it the head and vision. It's like sensory overload or like your in a fishbowl.. So drunk and out of it.. Please do another video.. 😢
Thank you for this video! I'm not going through this alone.
You hit the nail on the head !! Diagnosed in 2015 and still a journey!! I was diagnosed with vestibular migraines. Bouncy vision still and drunk walking , bumping into door ways on bad days . And yes the weather affect you !! So does . I feel like the human barometer. Your videos intrigue me to keep pushing on .
Michelle Jarosak thanks for sharing! Nice to hear from you.. I’m curious when you say the vids intrigue you to keep pushing. Do you mean with vrt? If so, did you do it and stop?
Sean Pangs yes I was doing Vrt .and did stop . It didn’t feel like it was helping . I struggle the most with my vision. When this first started I could barely see to drive , White knuckling it all the way to work . My neck would be so sore . It felt like I could literally feel every little bump in the road . Very hard to keep focused. Could really feel I was concentrating hard and causing stress. I’m better at driving now , but still struggling with walking and focusing. Bad days with walking are.. feeling like I’m stumbling over my own two feet . At times I can feel right foot turn in , and my brain is trying to correct but feels like it’s not getting connection. It’s weird.
Michelle Jarosak oh yeah I absolutely know how you feel because I’ve felt that all. And the reason why I asked because I was curious if you stopped vrt.. now I’m wondering if you start up again and just continue if it’ll help? I just passed two years and I’m feeling waaaay more normal days than before. Now I think about the days when vrt didn’t seem like it was helping, but in total I calculated and I’ve done about 900 hours in vrt in those two years. And I’m just wondering if that’s around the magic number of hours of vrt that someone needs to put in, in order for the brain to retrain. It’s worth a shot
It's good to see and hear other people that are going through the same problems, I've been having most of these problems for a little over a year now on and off and have been worried that it is serious, been to the doctor several times and they tell me it's just anxiety...Thanks for the video. Good luck to all whom may be going through this.
Chris Brannon yeah I got the “it’s just anxiety” too. But you know your body and you know it’s not just anxiety. I’m anxious because I can’t balance and walk properly haha. I hope things get better for you.. I’m a couple months shy of two years and I keep getting better month over month. I know and believe I’ll get pretty damn close to 100% soon
Has your tinnitus disappeared?
Good luck to you! Hope you do recover 100%. I’m dealing with similar symptoms and really appreciate your video. Thank you!
Thank you.. good luck to you as well.. hope for a speedy recovery to you!!
Everything he described, the gradual build up, the flare up of it again, delayed visual vertigo, anxiety, photo sensitivity, eyes jumping, patterns setting off a fun house effect. I experienced the same!
When I ended up in the ER my blood pressure and heart rate wouldn't go down. It delayed my diagnosis by a month to make sure it wasn't cardiac related. I broke down in front of my manager too! Luckily it's a desk position and we were doing almost nothing in the winter season.
It's it took almost 3 months to see an almost useless ENT to say I have a vestibular weakness on my left side. I could have told anyone that. My left leg feels short (but not as short a before, it's getting better).
Yeah, they never even told me it might be vestibular neuritis like they were afraid to admit it since it started so long ago. They refered me to vestibular therapy.
I'm happy to say I have been improving in the last few weeks. It was severe but I appear to be improving on a faster track. Everything got instantly better when I was finally able to sleep through the night again without waking up dizzy and terrified. I take melatonin now to help stay asleep.
Got on a heart health meal plan delivered to my house. Stopped caffiene. Realise now that my anxiety is down that caffiene doesn't affect it but alcohol does. Busy stores and certain lights still bother it.
Did my eye exercises the first time yesterday. I had my first therapy session two day ago.
It's helped my computer use already.
Here's the weird part. Early on sitting something that moves like a car that judders or a rocking chair eased my symptoms. I can't feel the spinning/swaying motion. Driving actually helps. Being outside helps.
I recorded a video of this hallway at work the has a ramp and winds around that has been bothering me. I'm going to show my therapisy to dial in the therapy.
Giving this vid to my therapist
Hi. I’ve been told I’ve got weakness in my left ear too. I’ve been dealing with this since February. How are you doing now? What medications have you taken, have they helped ?
@@julianacano2165hello I’d like to know as well I can’t drive a car etc
Thanks very encouraging, I am still undertaking my condition.John in South West Wales UK.
Thank you. I'm devastated. 15 days ago my life was turned upside down.
It gets better, and ppl get better at different rates (better than me)
Thank you for your video. I’m having similar symptoms and this video is giving my hope.
Sorry you're going through this, but there is hope. I'm fine now and living normally
My issue is my episodes last a day or two usually and mines related to my neck I believe as I have a reversed curve neck. Whenever I get to see a doctor, most of the symbols have either gone, or they don’t show physically like yours with nystagmus etc. it’s such a struggle to explain the floor is bouncing and my body feels like it has a constant loud heartbeat feeling throughout my whole body, whether I’m relaxed, trying to sleep trying to walk whatever I feel that. They originally said it was viral meningitis, it would never likely happen again, then it did, slightly changing symptoms each time, this last episode has stuck with me so far for weeks. Legs are weak and I feel drunk.
I’m 4 months in and starting to recover. I’ve had vertigo episodes, and spatial awareness problems. I would try to snap to an object and my eyes wanted to keep going. I had to expose myself to grocery shopping and started working out and fighting through the nausea. I started doing VRT and feeling a lot better. Every now and then I get a sense of numbness in my leg. I’m around 80% now. Hopefully I’ll be 100% soon. This is a weird Illness and nobody understands.
How are you feeling now doublearoncas?
Thanks for this it really helps ! I have been about 2 yrs into it and gradually getting better with help of you tube vids because all clinics closed in uk with COVID ! I totally understand what u said about walking in public I drive to a local park and found it so much easier because no one knew me ! I struggle walking downhill working on that !
Does the depersonalization always go away with vestabular disorders? Does it just leave on its own? I can't see a way owt
Today marks 8 months that I've had to deal with Vestibular Neuritis. It's now about 90% gone. I walk everywhere trying to shake this. Still feels like I'm walking on a waterbed. Still have the brain fog from time to time. Still have extreme sensitivity to sounds. Even someone washing dishes in the next room will make me jump.
My ENT now thinks I may have a Vestibular Migraine. He then prescribed me an anti-depressant. I told him I don't take anti-depressants. I'm the reason other people take anti-depressants.
In any case this summer has sucked walking past my parked Harley knowing I still can't ride it.
That floaty feeling sucks !
@@8benzin And now it's been 14 months.
On the plus side my ENT sent me to a Neurologist who asked me a simple question. Have you ever had your blood pressure measured while standing up?
Yeah while standing my B.P. is 85/65. That might be a cause.
@@8benzin Do you still have the floaty feeling? Thank you for your response.
So mine happened about 2 weeks ago. Total loss of hearing in my left ear, dizziness,, eye shake, vertigo and constantly light headed. I got on steroids immediately along with allergy drugs to help. They also gave me drugs for dizziness which help a little. They said it was caused by a virus but I am dealing with a lot. I went to a ENT who told me I have a small chance of my hearing coming back but not to count in it. I already have a 60% loss in my right. So I looked into vestibule exercises and they are helping. I changed my diet and started adding supplements that are good for the hearing. I’m going into a rehab center next week but honestly there is more on TH-cam than anywhere else. I will probably get back to work in a mont but I need to let my brain readjust. I’ve been walking in stores and I hold a cart. I want to be able to drive safely again. I can go short distances but I’m not comfortable with anything over 10 miles at this point. It seems to be getting better a little at time but I’m not going to rush it.
I'm just now starting to spin less. Like you said it came out of no-where. Trip to the ER by ambulance, and miss-diagnosed 3 times. Finally my ENT who saw me knew instantly that I had Vestibular Neuritis and prescribed me Prednisone. After 3 weeks the spinning is almost gone. He did say it was like the measles. Once it's gone it's gone. You don't get it again. Just prior to getting this I had my left shoulder totally replaced. My biggest concern was spinning out and landing on my new shoulder.
That's awesome, they do say if treated with prednisone early, it will help not have longer term effects. Glad you're doing good
We understand you bro I been on to this last 4 months and end up in ER over 20 time without real answer .Good luck to everyone
bkArbe Alba sorry to hear that I hope you feel better
Same I hated it, felt embarrassed and crazy
I’m so sorry for the ones dealing with this. I’ve gotten so many things tested and everything checks out “normal”. What’s helped me the most if following the advice of “The Steady Coach” here on TH-cam. She has many success stories as well that have given me so much hope and I’ve seen improvements within just one week!!
I wish everyone a recovery. ❤
Thank you for sharing!!! My VN began May of 2019.Went to urgent, ER,ect.I was getting improperly diagnosed intil I was seen at nerologyI was put on Prednisone for 12 days, I started to feel alittle better.I have had alot of theraphy. The anxiety is the hardest for me now,Im fine going into stores& driving only if somone is with me, going myself the anxiety is really bad.
Bertha Emerson the anxiety gets better.. confidence is a big thing. One you start to feel better, balance etc, the more confident in public places, the anxiety gets less and less.
@@seanpangs7131 Thank you!!!
God bless you! Wish you all the best and thank you for everything you said for those sruggling.
Thank you. All the best to you!
I never knew about this, maybe this is what I have, my doctor says I have bppv, my biggest thing is I get dizzy so much, and the more I walk the worst I feel. I was at the point where my anxiety got so bad I couldn’t leave the house, sometimes I feel like I’m disconnected from reality if that makes any sense, I sometimes get this pressure feeling in my head, and I’ve had test done on my ears and they have came back fine but to me my ears don’t feel right. I’m just tired of being miserable I can barely make it through a work day.
🙏🙏 for you I feel the same way I can’t drive it feels like my whole car is spinning I haven’t driven a car since October
Thank you for making this video! I have to make my own video too to help spread the word -- I had a relapse of VN earlier this year and tho it was a brutal 3 months, I recovered thankfully.
hawaiidispenser definitely spread the word and help people out! I’m glad you’re doing better :)
@hawaiidispenser glad you recovered! I'm almost at month 3 and my last lingering symptom is the walking on a trampoline although it's getting slowly better.
What helps this symptom? I've been walking like crazy so i think that's helping too.
@@alexandrawalton7616 Thank you! The trampoline walking feeling was my last lingering symptom as well. My dizziness and nausea had all gone by 1.5 months, but the trampoline lasted another 1.5 months. I added more side to side stepping, which i learned from Simply Seth on TH-cam (see his video in the snow) as well as adding chair spins... but the plain truth is... I stopped all vrt after a few weeks and just walked everyday, twice a day and then one day i noticed.... Hey, no moon walk feeling! So its probably gonna happen on its own in time for you too. stay active, but try not to stress and it will come. good luck!
@@hawaiidispenser thanks so much for the reply. Yup my dizziness and nausea stopped at 1.5 months as well! I feel like I'm right there! Thanks I'll go check out seth's video 😊
Hello so walking is the exercise for this?? VRT not required? Opinion please thank you ❤️
Thank You for the positivity!! I have been feeling this for a month and a half now. Couldnt tell what it is as i havent to so many doctors. This gives me so much hope! Im praying for recovery for the next year!
Gelo Ybanez it definitely gets better! Some hard work and patience for sure! All the best
Thank you so much for making this video! i have been suffering from vestibular neuritis for 3 months now. I am slowly recovering but I need to do more to help with my process
Good to hear you’re doing better. Maybe doing more is good but I learnt I had to listen to my body, sometimes I had to do less as well. All the best to you
Has your tinnitus disappeared?